Discussion in 'XMRV Testing, Treatment and Transmission' started by Kati, Feb 4, 2010.
- possibly because their dealings with M.E./CFS patients are somewhat less than ethical?
Thanks for drawing this amendment to the wording of the ICL notice to our attention. I shall update my site.
Not all institution's FOI offices issue a reference number so I always ask for one, myself.
A few years ago, if you wanted to submit an FOI to the MRC, there was an online facility to do this. It would auto generate a reference number in an acknowledgement of receipt. Then the facility was withdrawn, but I prefer, in any case, to make requests via email.
This last few years, I have often had to chase the MRC FOI office for an acknowledgement and they don't provide a reference number as a matter of course, which is not good practice.
As soon as the DSM-5 dust has settled, I will publish your request and Kim's, plus the questions raised with Dr Steve Kay by Stephen Ralph, in one compilation posting on my ME agenda site.
As far as publishing responses obtained under FOI is concerned, my understanding is that once information has been provided under FOI, it can be released into the public domain. Some institutions also publish responses on their own websites with the member of the public's name and contact details redacted.
Occasionally I have received information early, but usually it's been nearly or the full 20 working days. There is system for appeal if you are not satisfied with the reasons given for exemption(s).
I'm not sure whether anyone's mentioned it in this thread, but, The IC withdrew their test shortly after a lady on another forum who tested XMRV+ with VIPdx said they'd pay to be tested with the IC, and said they'd go to the papers if they tested negative,
Food for thought.
Would you clarify, please, who the lady had said this to? Direct to ICL or on a forum?
The webpages were taken down mid morning, on Monday 8 February, following the issuing of a notice by the ME Association on the Saturday, and following an exchange between Fiona Verity and Prof Wessely on 5 February.
If the lady was in direct contact with ICL, can you confirm the date, please, that the lady discussed this with ICL?
I don't remember her name, she posted on the WPI discussion section of their facebook page. I made a comment on this forum about it then realised I should take down the post incase anyone from the IC read it. She also took her post down from the WPI board.
I'm sure someone else on this forum will be able to give you more information.
I'd still like to know whether the IC has been able to detect XMRV in a patients blood sample, as far as I'm aware they've only been able to get a positive result from a spiked sample.
Imperial College, London, Molecular Diagnostic Unit (MDU) modifies its XMRV clarification notice
ME agenda website Shortlink: http://wp.me/p5foE-2Mz
It has come to my attention, today, that the “notice of clarification” posted on the webpages of Imperial College Molecular Diagnostic Unit (MDU) has been modified since first published, last Monday.
The notice now reads:
The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements.
There has been some confusion around the availability of the XMRV test, for which we apologise. We would like to clarify that it is only available as part of an ethically approved research project. We emphasise that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.
For reference, the notice published on Monday, 8 February had read:
We wish to apologise for any confusion concerning the availability of this test and would like to clarify that it is only available as part of an ethically approved research project. We emphasis that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test.
Note that neither notice clarifies for which diseases/conditions/study domains this XMRV test facility is being offered.
Nor does the Molecular Diagnostic Unit confirm the information put out by the ME Association on Saturday, 6 February, that the test “…only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.”
The ME Association is not prepared to disclose the source of this information.
6 February 2010
Late last night The ME Association was informed that this announcement about XMRV testing does not apply to people with ME/CFS, or suspected ME/CFS. It only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday. It will appear here once we have it.
Do you have a date for the posting?
Fiona Verity's questions to Prof Wessely were responded to on 5 February; the MEA's "clarification" was published on the 6th. The pages were taken down the following Monday, the morning of the 8th.
I'm sure it was posted it on the 5th, maybe one of the mods can confirm.
It's probably nothing, it was just something I'd noticed.
These are the questions posted by Stephen Ralph that were mentioned earlier by ME Agenda.
Suzy asked my if I might post them here as she is quite busy right now.
From Stephen Ralph via Co-Cure
09 February 10
[CO-CURE] ACT: Questions for Dr Steve Kaye and Professor Simon Wessely at Imperial College
It was recently announced that the test offered on the Imperial College
website for XMRV in relation to CFS/ME and prostate cancer was now being
withdrawn with immediate effect.
Imperial's excuse for withdrawing the XMRV test from their website for
"CFS/ME" and prostate cancer was because it wasn't meant for patients and
that it was only meant for "an ethically approved research project."
Well, if this was the case then where does that leave all the other tests it
offers on its website?
STI's for 40 (each),
HCV genotyping for 100,
HBV for Genotypic Drug Resistance costing 100,
HTLV (costs covered by the NHS) and
HIV-1 (costs covered by the NHS)
Question 1 - Was this test that Imperial was offering (on the same basis as
all the other test above) the same test used for the recent Imperial/PLoS
Question 2 - Was the test different and if so - how was it different?
Question 3 - As all the other tests (shown above) are still available under
the same framework then regardless of whether or not such tests are only
available via requests from GP's or Specialists - opposed to being offered
direct to patients; why was the XMRV test removed?
Question 4 - If the answer to Question 2 was "No" and it wasn't different
then where does this leave the credibility of the PLoS One/Imperial study?
Question 5 - Was the Imperial test removed from the website because it was
inherently unreliable? (Go back to Question 4)
Readers wanting answers to these question need to contact Dr Steve Kaye who
was cited on the Imperial website as being the contact for the XMRV test
Tel: 020 759 43917 (direct)
FAO Dr Steve Kaye
Molecular Diagnostic Unit,
Imperial College London
4th Floor, Medical School Building
St. Mary's Hospital
London W2 1PG
I have asked Dr Kaye these questions and so far I have not received a reply.
Coming up for air...
Thanks for posting the above, Julius.
A compilation of the FOIs and the above are on my "to do" list for early next week.
Something else I shall be doing:
We know, thanks to Abraxas' sharp eyes, that Imperial College MDU modified their initial notice of clarification to include the additional line:
"The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements."
this statement fails to clarify for which specific diseases/conditions/study domains this ICL MDU XMRV test facility is being offered to researchers.
So this addendum to the "clarification" does not confirm the information put out by the ME Association on Saturday, 6 February, that the test “…only relates to the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer.”
Since the ME Association has been unwilling to provide the source for the statement above, I intend to submit a very brief FOI to ICL requesting specification of the diseases/conditions/study domains for which this XMRV test facility is being offered to researchers.
The reason being, that if ICL has no ongoing or scheduled research XMRV studies or projects being carried out within the institution but is making a testing facility available to external research studies then Kim may not receive a full response to her questions.
Addidionally, someone supplied the ME Association with information which does not appear to correspond to the information that is now being given out by ICL - and that needs untangling.
Suzy, Kim, Julius. Abraxas, anybody else who's been contributing to this fantastic work...
WELL DONE. I'm in awe. I'm not feeling quite bright enough to contribute in any way yet, but I would like to encourage from the sidelines.
If you think my fast lil fingers can help, let me know
I would like to thank those involved in this too - all I did was happen to notice that the statement on the IC website had been modified :Retro redface: I'm afraid I'm not up to contributing in any real way - but to those that are, please keep up the good work :Retro smile:
I am a very slow thinker :ashamed: but I finally realised that they are saying that if any one needs XMRV testing done as part of a research project they will do it for them at a charge of 200 a test. However, they will only do so if the research has been approved by an ethics committee.
I think if I was a researcher I would be wary of spending my grant on a test that has not been shown capable of detecting XMRV in a normal blood sample, only in a plasmid.
We will have to watch that any research done on ME doesn't use this test.
True, but I you were a 'tobacco scientist' looking for a negative result it would be worth your whole grant! N'est-ce pas?
A week late, but it has gone in today. I'll keep you posted:
To: Imperial College London, Freedom of Information Office
Re: XMRV testing available via ICL Molecular Diagnostics Unit (MDU)
A revised notice on the website for the MDU states:
"The MDU offers XMRV testing for research purposes only. If you are a researcher who is interested in XMRV testing, please contact the unit with an outline of your requirements.
"There has been some confusion around the availability of the XMRV test, for which we apologise. We would like to clarify that it is only available as part of an ethically approved research project. We emphasise that our laboratory does not deal directly with patients and we are not advising people who are concerned that they might have CFS, or who have been diagnosed with CFS, to request this test."
On 6 February, The ME Association had published a notice on its website stating that it had been informed that an earlier announcement about XMRV testing on the MDU website:
"did not apply to people with ME/CFS, or suspected ME/CFS"
and that the test related only to:
"the availability of the Imperial College XMRV test to referring doctors who are dealing with cases of prostate cancer. A full clarification will appear on the Imperial College website on Monday."
Although it has since been clarified by ICL that the XMRV testing being made available through the MDU is for researchers only, confusion persists over which diseases/conditions this test is being offered for.
I request the following information under the FOI Act:
1] For what Diseases/conditions/study domains is the XMRV test being made available to researchers?
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